Advocacy in Action: Post-Albany Days Updates
Your stories made a direct impact on our legislators, and we are so grateful for the energy you brought to the Capitol. As we transition back to our communities, help us keep the momentum going by completing these two quick items if you haven't done so already:
Share Your Feedback: Post-Event Survey – Help us make next year even better!
Upload to Our Shared Photo Album – We’d love to see the day through your eyes.
Momentum is Building!
Our work in Albany is already moving the needle. We are closely monitoring the final budget negotiations and are thrilled to share the following updates:
Growing Support for "Cover Rare" (S965 / A2384A)
Thanks to your meetings, we have successfully added four new Assembly cosponsors to the Cover Rare bill! We would like to thank the following legislators for their support:
Assemblymember Angelino
Assemblymember Cook
Assemblymember Gray
Assemblymember Lemondes
Legislative Champions Stepping Up
Senator Gallivan Supports Budget Reform: Senator Gallivan has issued a formal letter to legislative leaders requesting that Part HH of the TED Article VII executive budget proposal—which includes critical protections for our community—be included in the final FY 2027 Enacted State Budget. Click here to read the Senator’s letter.
Senator Addabbo Advocates for Bleeding Disorders: Senator Joseph P. Addabbo, Jr. continues to be a vocal advocate for our access to care. Read his latest press release here.
What’s Next?
Our work doesn’t stop here. As the budget deadline approaches, we remain focused on:
Prior Authorization Reform: Ensuring that the voice of the rare disease community remains a priority in the final budget language.
Expanding the Cosponsor List: We are continuing to follow up with the offices you visited to ensure even more legislators sign on to protect our care.
tweets from previous albany days
